Rohhad Nordic

24/04/2026

Rohhad Nordic har afholdt generalforsamling, hvor vi blandt andet har gjort status på det seneste års arbejde og set frem mod de kommende initiativer. I den forbindelse er der også sket ændringer i bestyrelsen.

Vi vil samtidig rette en stor tak til de afgående bestyrelsesmedlemmer for deres indsats i Rohhad Nordic. Jeres engagement og arbejde har været en vigtig del af foreningens udvikling, og vi sætter stor pris på den tid og energi, I har lagt i fællesskabet.

Bestyrelsen består af:
Julie Væver - Forperson
Henrik Nielsen – bestyrelsesmedlem og kasserer

Vi er glade for at byde Henrik Nielsen velkommen i bestyrelsen som nyt medlem og kasserer.

Henrik arbejder til daglig som hjælper og har gennem sit arbejde et tæt kendskab til hverdagen med en kompleks sygdom og de udfordringer, der kan følge med. Han har desuden en baggrund fra slagteriet i Sæby, hvor han blandt andet har været tillidsmand. Herfra bringer han erfaring med ansvar, samarbejde og at varetage andres interesser.

Med sin jordnære tilgang og stærke ansvarsfølelse bidrager Henrik med ro, overblik og fokus i foreningen.

Vi ser frem til samarbejdet og til den værdi, Henrik vil tilføre bestyrelsesarbejdet i Rohhad Nordic.

28/02/2026

On Rare Disease Day, we stand united for ROHHAD.

Today, we honor:
💜 ROHHAD organizations working across borders
💜 Awareness accounts amplifying our voices
💜 Every individual and family living with ROHHAD
💜 Caregivers across the world who never clock out

ROHHAD is ultra-rare.
But our community is strong.

Across countries. Across languages. Across time zones.
We stand together.

United for awareness.
United for research.
United for every life affected by ROHHAD💜

Organizations:nordicmxru

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Awareness accounts and advocates





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rohhad

27/02/2026

Good Morning beautiful souls, how has January been for you all? Hoping everyone has had a great festive period and that the new year is bringing many blessings your way. We have been a little quiet online the past few weeks however we have been very busy behind the scenes with ROHHAD Research! and making some plans for our awareness campaign and fundraisers in 2026. Despite incredible positive progress in ROHHAD research we still have a way to go to complete our mission to together though we can achieve this 💪🏻🙌🏻🫶🏻 can we rely on your continued support this year? We hope so as your support is vital to saving the lives of the ROHHAD children and adults. Keep an eye on our pages over the coming days and weeks to see how you can get involved and make a difference 🙌🏻 fans

27/02/2026

We are reaching out to ask those of you who believe in the power of prayer to please keep our Aaron and his fellow ROHHAD warriors in your prayers at this time. 🙏🫶🏻🙏

You may have noticed we have not been as active online and with fundraisers as we would be normally especially in the lead up to rare disease day. This has not been intentional however we have had to focus solely on our immediate family and in particular Aaron recently.

We want you to know that there is still plenty going on in the background and events are being organised, research has continued and work we don’t always share on the social pages has still be underway especially in relation to funding research projects etc.

We do have some events in the coming year that we will be sharing soon but for now we thank you for keeping Aaron and all of our ROHHAD warriors in your prayers.

This Saturday is day 2026 and the theme this year is “More than you can imagine” we will be sharing quite a few posts over the next few days, they will be blogs that we will reshare from last year and our sister charity Rohhad Nordic will also be sharing posts etc that we will reshare.

Please take some time this week to read the posts and help us raise awareness, understanding and support for the incredible

For now it is almost RareDiseaseDay, so help us , , and .

27/02/2026

27/02/2026

The upcoming inclusion of orphan medicinal products within the EU Health Technology Assessment Regulation (HTAR) raises important questions for patients, experts and policymakers. This track on Preparing Reimbursement Decisions will explore how Europe can prepare for this next phase.

Building on lessons from oncology products and advanced therapy medicinal products (ATMPs), sessions will examine how the HTAR has been implemented so far and what this means for the inclusion of orphan products in 2028. Discussions will reflect on successes, challenges, and readiness at both European and national levels.

The track will also explore how European joint reports are used in national contexts, how rare disease–specific challenges, such as small patient populations and limited expertise can be addressed, and how people living with rare diseases can meaningfully contribute. Participants will consider how clinical evidence can support faster access to treatments, and whether HTA approaches should differ for rare and ultra-rare conditions.

Join these sessions to help strengthen HTA processes for orphan medicines and support more timely and equitable access to treatments across Europe.

👉 Register & learn more: https://go.eurordis.org/register-in

30/12/2025

Julen er passeret, og vi står i de stille dage før et nyt år begynder. For mange kan denne tid være fyldt med refleksion – over det, der har været, det der stadig gør ondt, og det håb, vi måske forsigtigt tager med os videre.

I ROHHAD Nordic ved vi, at livet med en sjælden diagnose ikke følger kalenderen. Derfor vil vi sende en kærlig hilsen til alle jer, der står midt i det – uanset om I går ind i det nye år med håb, træthed, usikkerhed eller alt på én gang.

Tak fordi du er en del af fællesskabet. Tak for modet, ærligheden og styrken – også på de dage, hvor den føles langt væk.

Vi går ind i det nye år sammen. Ét skridt ad gangen 🤍
Et kærligt og håbefuldt nytår fra ROHHAD Nordic ✨

24/12/2025

✨ Merry Christmas ✨

From all of us at ROHHAD Nordic, we wish you a Christmas filled with love, warmth, and gentle moments of peace.

To every child living with ROHHAD, to families, caregivers, clinicians, researchers, and supporters — thank you for being part of this community. Your strength, compassion, and dedication mean more than words can express.

May this Christmas bring comfort to your hearts, light to the dark days, and hope for the year ahead.

💙 With love,
ROHHAD Nordic

MerryChristmas

02/12/2025

🎉 Today we celebrate something extraordinary – Julie turns 35 years old! 🎉

For most people, a birthday is a personal milestone.
For the ROHHAD community, this is history.

Turning 35 while living with ROHHAD is not just a birthday – it is a world record.
A milestone that gives hope to families, patients, and everyone fighting this rare and life-threatening disease.

Julie is not only the Founder & Chairperson of ROHHAD Nordic; she is a powerful advocate, a voice for those who cannot speak, and a daily reminder that resilience can move mountains. Her journey shows that life with ROHHAD is difficult, unpredictable, and often frightening — but also that strength, support, and community can create possibilities no one thought were achievable.

Today, we celebrate Julie.
But we also celebrate hope.

🌟 Happy 35th Birthday, Julie — thank you for showing us what courage looks like.
🌟 Thank you for fighting for the ROHHAD community every single day.
🌟 And thank you for proving that records exist to be broken.

Please join us in wishing Julie a very special birthday — and in honoring this historic moment for the global ROHHAD community

.rohhad